Understanding Diabetes Self-Management Among Vietnamese Americans: A Focused Ethnography.

INTRODUCTION: The Vietnamese American (VA) population is projected to grow to 3.9 million by 2030. This demographic shift could affect health care cost as VAs have greater susceptibility for type 2 diabetes mellitus (T2DM). Few studies have explored diabetes self-management (DSM) among VAs. The aim of this study was to explore and describe how VAs with T2DM perceive diabetes and DSM practices. METHOD: A focused ethnographic design, using semi-structured interviews and participant observation, was used to understand DSM among VAs. RESULTS: The following four themes emerged: (a) defining diabetes and its etiology, (b) body awareness as a way of managing diabetes, (c) maintaining strength after being diagnosed with diabetes, and (d) navigating sources of information regarding diabetes. DISCUSSION: The study findings suggest that DSM is a complex and recursive process, with integrations of cultural practices and influences from the environment. These findings can help the development of culturally tailored interventions to assist with DSM.

Psychosexual responses to BRCA gene mutations in women of childbearing age.

BACKGROUND: Diagnosis of a BRCA gene mutation presents a dilemma because life-changing medical decisions must be made to prevent breast and ovarian cancer. There is minimal evidence regarding how psychosexual functioning, psychological well-being with regard to body image and sexuality, affects the decision to have prophylactic treatment in women of childbearing age (WCBA; 18-49 years) with a BRCA gene mutation. PURPOSE: To explore, describe, and interpret the experience of women with a BRCA mutation during the treatment and decision-making process. METHODOLOGY: A qualitative descriptive design was used to recruit participants online through social media postings and from national and local BRCA support groups. Participants participated in semistructured interviews exploring their experience after BRCA diagnosis. Interpretive descriptive analysis was used to identify themes. RESULTS: The purposive sample comprised 18 women aged 21-49 years. Four major themes, such as body image, sexuality, femininity, and childbearing/childrearing, were identified that influenced decisions related to the diagnosis and management of a BRCA mutation. All participants voiced that concerns regarding body image and sexuality caused hesitancy in their decision to have prophylactic surgery. Women who had undergone bilateral prophylactic mastectomy were concerned about the impact of the surgery, scarring, breast disfigurement, and the lack of sensation resulting from surgical intervention. CONCLUSIONS: Psychosexual concerns arise from internal and external influences that significantly affect the decision to undergo prophylactic measures. Therefore, body image, sexuality, and sexual orientation should all be addressed during the decision-making process. IMPLICATIONS: Provider communication and preparation for realistic surgical outcomes can be improved to assist WCBA throughout the decision-making process and enhance psychosexual functioning.

Exploring Latino Perspectives in Childhood Fever: Beliefs, Practices, and Needs.

INTRODUCTION: Latino parents have significant knowledge gaps and misconceptions about fever. In this study, we explored Latino beliefs and practices around fever and its impact on their care decisions. METHODS: A qualitative-focused ethnography was conducted with 21 Latino parents. Semi-structured interviews were completed, and inductive thematic analysis was used to identify themes and subthemes. RESULTS: Three major themes emerged: (a) the meaning of fever; (b) seeking guidance; and (c) navigating fever. Subthemes included: a sign of folk illness, a sign of infection, trust in health care providers, watchful waiting, and barriers and needs. DISCUSSION: Latino parents have significant knowledge gaps about the role of fever in illness. They engage multiple systems of care but rarely share their fears with health care providers. Culturally-sensitive interventions incorporating traditional and biomedical approaches are needed. Findings can help inform future interventions targeting knowledge gaps in this population.

A Person-Centered Approach Understanding Stroke Survivor and Family Caregiver Emotional Health.

ABSTRACT: BACKGROUND: The purpose of this study was to incorporate a person-centered approach to understand the emotional health needs and perspectives of stroke survivors (SSs) and their caregivers. METHODS: In collaboration with 4 SSs and caregivers as research partners, quantitative data were collected to assess poststroke emotional health needs, and qualitative data were collected to gain insight into SS and caregiver emotional health perspectives after stroke. RESULTS: Forty surveys (n = 26 SSs, n = 14 caregivers) were collected. The predominate emotional health needs were frustration (65%), anxiety (54%), and stress (50%) for SSs and stress (71%), worry (57%), and frustration (57%) for caregivers. Two group interviews (n = 7 SSs, n = 3 caregivers) were completed. Four emerging themes were identified: receiving support from those in similar situations, poststroke emotional responses, situations experienced in healthcare settings, and a hypervigilance for sudden and unexpected events. CONCLUSION: Emotional healthcare services for SSs and their caregivers may consider providing reoccurring mental health education and multifaceted treatment approaches, including provision of peer support, and addressing the unique emotional stressors SSs and caregivers may be experiencing. The small sample size precludes generalizing the results into the broader stroke population. However, by leveraging the lived experience of SSs and their caregivers, the results may help find ways to support SSs' and caregivers' emotional health.

Implementing an inpatient integrative medicine consult service for children with pain: A qualitative analysis.

OBJECTIVES: Complementary and integrative medicine (CIM) therapies show clinical benefits with minimal side effects, yet challenges to effective integration in hospital settings remain. The current study aimed to better understand the process of integration of CIM therapies at a large urban pediatric hospital from the perspectives of providers, parents, and administrators. DESIGN: The study employed an applied medical ethnography. SETTING: The ethnography was conducted before, during, and after an Integrative Medicine Pain Consult Service (IM Pilot) was implemented at a large urban pediatric hospital during the spring of 2017. MAIN OUTCOME MEASURES: Fieldwork interviews, participant observations, and document review captured aspects of the integration of CIM over a 6-month study period. Ethnographic analysis included thematic content analysis. Participants included providers (n = 10), administrators (n = 5), and parents of patients (n = 11). RESULTS: Emergent themes from analysis of the interviews and field notes were organized according to the socio-ecological model. Themes included facilitating factors for CIM pain management at the intrapersonal and community levels (Alignment with Parental Perceptions of Child Needs and Provider Desire to Offer Care, Alignment of CIM with Spiritual Beliefs and Community Norms) and barriers at the interpersonal, organizational, and political levels (Inter-professional Challenges, Lack of Logistics in Place for Referrals and Triaging Patients with Pain, Lack of Remuneration/Insurance Reimbursement for Care). CONCLUSIONS: To address barriers, future efforts to implement integrative pain management programs in pediatric hospital settings may consider testing implementation strategies, including engaging program champions and family advocates, providing education on CIM professions and therapies to hospital staff, and billing for provider time rather than individual CIM therapies.

Hispanic Parental Beliefs and Practices in the Management of Common Childhood Illnesses: A Review of the Literature.

Introduction: Hispanic parents are more likely to perceive common childhood illnesses as serious and needing immediate attention compared with other groups. The purpose of this review is to describe the factors that influence Hispanic parental management of common childhood illnesses. Method: A systematic search of PubMed, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature was conducted. Studies were screened and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Results: Fifteen studies met the inclusion criteria for synthesis. Key findings include the following: (a) parental fears around common illnesses, (b) belief in folk illnesses, (c) use of traditional healers and remedies, (d) family members as a source of health information, (e) medical pluralism, and (f) barriers to care. Conclusion: Hispanic parents simultaneously engage both biomedical and folk spheres of treatment. More current research is needed to understand Hispanic beliefs and practices and to formulate culturally sensitive interventions in this population.

Moral distress perspectives among interprofessional intensive care unit team members.

AIM: To examine interprofessional healthcare professionals' perceptions of triggers and root causes of moral distress. DESIGN: Qualitative description of open-text comments written on the Moral Distress Scale-Revised survey. METHODS: A subset of interprofessional providers from a parent study provided open-text comments that originated from four areas of the Moral Distress Scale-Revised, including the margins of the 21-item questionnaire, the designated open-text section, shared perceptions of team communication and dynamics affecting moral distress, and the section addressing an intent to leave a clinical position because of moral distress. Open-text comments were captured, coded, and divided into meaning units and themes using systematic text condensation. PARTICIPANTS: Twenty-eight of the 223 parent study participants completing the Moral Distress Scale-Revised shared comments on situations contributing to moral distress. RESULTS: All 28 participants working in the four medical center intensive care units reported feelings of moral distress. Feelings of moral distress were associated with professional anguish over patient care decisions, team, and system-level factors. Professional-level contributors reflected clinician concerns of continuing life support measures perceived not in the patient's best interest. Team and unit-level factors were related to poor communication, bullying, and a lack of collegial collaboration. System-level factors included clinicians feeling unsupported by senior administration and institutional culpability as a result of healthcare processes and system constraints impeding reliable patient care delivery. ETHICAL CONSIDERATIONS: Approval was obtained from the Institutional Review Board (IRB) of the University of Texas Health IRB and the organization in which the study was conducted. CONCLUSION: Moral distress was associated with feelings of anguish, professional intimidation, and organizational factors that impacted the delivery of ethically based patient care. Participants expressed a sense of awareness that they may experience ethical dilemmas as a consequence of the changing reality of providing healthcare within complex healthcare systems. Strategies to combat moral distress should target team and system interventions designed to improve interprofessional collaboration and support professional ethical values and moral commitments of all healthcare providers.

The Good, the Bad, and Recovery: Adolescents Describe the Advantages and Disadvantages of Alternative Peer Groups.

In 2017, approximately 1.5 million American adolescents had a substance use disorder (SUD). Adolescents with SUD risk hindering their neurological development, which can result in problems with memory and self-regulation, and in turn disrupt their education, relationships, and life opportunities. Treating adolescents with SUD is challenging. Thus, effective models that help adolescents engage in long-term recovery are needed. The Alternative Peer Group (APG) is an adolescent recovery support model that incorporates pro-recovery peers and sober social activities into standard continuing care practices. In this qualitative study thematic content analysis methods were used to explore transcripts from in-depth interviews with adolescent APG participants collected in a prior study. The aim of this secondary analysis was to get a clear understanding of adolescents' perceptions of the advantages and disadvantages of APGs for supporting SUD recovery. Findings suggest that pro-recovery peer and adult role models, structured activities and a positive social climate that promotes fun, a sense of belonging, and accountability are continuing care elements that are likely to help adolescents resolve their ambivalence about SUD recovery and increase their motivation to engage in the hard work of recovery. These findings can inform the design of effective recovery support model services that promote long-term recovery for adolescents with SUD.

An Ethnography of Parents' Perceptions of Patient Safety in the Neonatal Intensive Care Unit.

BACKGROUND: Parents of neonates are integral components of patient safety in the neonatal intensive care unit (NICU), yet their views are often not considered. By understanding how parents perceive patient safety in the NICU, clinicians can identify appropriate parent-centered strategies to involve them in promoting safe care for their infants. PURPOSE: To determine how parents of neonates conceptualize patient safety in the NICU. METHODS: We conducted qualitative interviews with 22 English-speaking parents of neonates from the NICU and observations of various parent interactions within the NICU over several months. Data were analyzed using thematic content analysis. Findings were critically reviewed through peer debriefing. FINDINGS: Parents perceived safe care through their observations of clinicians being present, intentional, and respectful when adhering to safety practices, interacting with their infant, and communicating with parents in the NICU. They described partnering with clinicians to promote safe care for their infants and factors impacting that partnership. We cultivated a conceptual model highlighting how parent-clinician partnerships can be a core element to promoting NICU patient safety. IMPLICATIONS FOR PRACTICE: Parents' observations of clinician behavior affect their perceptions of safe care for their infants. Assessing what parents observe can be essential to building a partnership of trust between clinicians and parents and promoting safer care in the NICU. IMPLICATIONS FOR RESEARCH: Uncertainty remains about how to measure parent perceptions of safe care, the level at which the clinician-parent partnership affects patient safety, and whether parents' presence and involvement with their infants in the NICU improve patient safety.

Employing Evidence in Evaluating Complementary Therapies: Findings from an Ethnography of Integrative Pain Management at a Large Urban Pediatric Hospital.

BACKGROUND: Complementary and Integrative Medicine (CIM) shows positive clinical benefit with minimal side effects, yet, challenges to effective integration of CIM providers in biomedical health care settings remain. This study aimed to better understand the role evidence played in the process of integration of complementary therapies into a large urban pediatric hospital from the perspective of patients, caregivers, providers, and administrators through applied medical ethnography. METHODS: An ethnography was conducted over the course of 6 months in a large urban pediatric hospital in the Southern United States. At the time, the hospital was piloting an integrative medicine (IM) pain consult service. Purposive sampling was used to select providers, patients, administrators, and caregivers to follow as they engaged with both the preexisting pain service and pilot IM pain services. Field observation and interviews were conducted with 34 participants. Thematic content analysis was used to analyze field notes, interview transcripts, and documents collected. FINDINGS: Analysis of the data revealed five themes regarding the role of evidence in the process of integration: Anecdotal Evidence and Personal Experience Effecting CIM Use, Open to Trying Whatever Works, Resistance to the Unfamiliar, Patients and Parents Trusting Doctors as Experts, and Importance of Scientific Evidence to Biomedicine. All themes address the role of evidence in relationship to acceptance of complementary therapies and correspond with three thought processes: critical thinking, relying on others for evidence, and reactionary thinking. CONCLUSION: Both scientific and anecdotal evidence informed CIM use in this context. Biomedical environments seeking to integrate CIM into pain treatment regimens will need to engage all relevant stakeholders in building education, clinical training, and research programs that are critically informed about the context and evidence for CIM.

Forensic Nursing State of the Science: Research and Practice Opportunities.

INTRODUCTION: The International Association of Forensic Nurses (IAFN) is the only nursing organization advancing the forensic nursing specialty. The organization seeks to advance the profession, and one mechanism for doing so is development of a research agenda. METHODS: The purpose of this action-based research study was to aid in the development of a forensic nursing research agenda. The study was carried out in two integral stages: (a) focus groups with IAFN members attending the annual conference and (b) reviewing posted IAFN member listserv material. RESULTS: The findings of this study identified similar gaps of other nursing specialties experiencing "growing pains," including role confusion and variation in educational preparation. CONCLUSION: Findings from this study will inform development of the IAFN 5-year research agenda to advance forensic nursing science and evidence-based practice.

Interconnection: A qualitative analysis of adjusting to living with renal cell carcinoma.

ABSTRACTObjective:Adjusting to cancer is an ongoing process, yet few studies explore this adjustment from a qualitative perspective. The aim of our qualitative study was to understand how patients construct their experience of adjusting to living with cancer. METHOD: Qualitative analysis was conducted of written narratives collected from four separate writing sessions as part of a larger expressive writing clinical trial with renal cell carcinoma patients. Thematic analysis and constant comparison were employed to code the primary patterns in the data into themes until thematic saturation was reached at 37 participants. A social constructivist perspective informed data interpretation. RESULTS: Interconnection described the overarching theme underlying the process of adjusting to cancer and involved four interrelated themes: (1) discontinuity-feelings of disconnection and loss following diagnosis; (2) reorientation-to the reality of cancer psychologically and physically; (3) rebuilding-struggling through existential distress to reconnect; and (4) expansion-finding meaning in interconnections with others. Participants related a dialectical movement in which disruption and loss catalyzed an ongoing process of finding meaning. SIGNIFICANCE OF RESULTS: Our findings suggest that adjusting to living with cancer is an ongoing, iterative, nonlinear process. The dynamic interactions between the different themes in this process describe the transformation of meaning as participants move through and revisit prior themes in response to fluctuating symptoms and medical news. It is important that clinicians recognize the dynamic and ongoing process of adjusting to cancer to support patients in addressing their unmet psychosocial needs throughout the changing illness trajectory.

Treatment recidivism in adolescents with mental illness: A focused applied medical ethnography.

PROBLEM: Treatment recidivism, described as frequent unplanned relapse readmissions, is a national problem predominant in adolescents with mental illness. Because the main triggers of treatment recidivism are not fully understood, the purpose of this study was to explore treatment recidivism (i) to better understand treatment recidivism from the perspectives of recidivist adolescents with mental illness, (ii) to describe major factors that contribute to treatment recidivism and how best to minimize them from the perspectives of these adolescents, and (iii) to describe their interaction with the medical culture. METHODS: A focused applied medical ethnography was used to study 16 purposively selected adolescents. Interviews were conducted together with unobtrusive unit observation of the participants and collection of demographic and clinical information. FINDINGS: The participants were nearly unanimous in identifying the "additional stressors" of problematic parental relations and school bullying as the main triggers of treatment recidivism over and above their "routine stressors" of adolescence and mental illness. They had mixed perceptions of treatment recidivism and described their interaction with the medical culture as positive. CONCLUSION: Further research is needed to determine the impact of parental relations and school bullying on recidivism in adolescents with mental illness.

Steps in Developing a Patient-Centered Measure of Hospital Design Factors.

Patients and families are at the center of care and have important perspectives about what they see occurring surrounding their healthcare, yet organizations do not routinely collect such perspectives from patients/families. Creating patient-centered measures is essential to understanding what they perceive about the environment as well as achieving the goal of patient-centered care. We focus this research methodology column on describing a four-step medical ethnography approach that can be used in developing patient-centered measures of interest to those studying built environments. In this column, we use this approach to illustrate how one might develop a measure that can be used to understand parent perceptions of the safety culture in neonatal intensive care units.

Exceptional patients and communication in cancer care-are we missing another survival factor?

OBJECTIVE: There is increased awareness of the issue of exceptional survival beyond expectations among cancer patients with poor prognosis, and researchers are starting to look closely at this phenomenon. In this study, we explored the perceptions of these "exceptional patients" as to their understanding and insight into their unusual experience. METHODS: We used a qualitative approach consisting of in-depth, open-ended interviews with exceptional patients in two locations, Texas and Israel, from 2007 to 2014. The interviews were audio-recorded and qualitatively analyzed, and gave rise to illness narratives entailing detailed descriptions of patients experience over the course of their disease and treatment. A qualitative content analysis focusing on contextual meaning was utilized. RESULTS: Twenty-nine patients participated in our study. The mean years since diagnosis was 9.55 years (range, 4-23 years). All patients had received conventional treatment, including surgery, chemotherapy, and radiation therapy. One of the prevailing themes in these interviews was related to the patient-doctor relationship. Most participants mentioned that the support they received from one or more physicians was a crucial factor for their exceptional survival. CONCLUSION: The significance of patient-doctor relationship in cancer survival requires further research. This research is especially important as it adds to the current trend of patient centered care and points to the added value of relationship between health providers and patients. This relationship, as perceived by these exceptional patients, can be a factor that adds to improved survival in cancer care.

From Dissertation Defense to Dissemination: Jump Start Your Academic Career With a Scholar Mentor Group.

PROBLEM: The dissertation provides an excellent source of scholarly productivity for new doctoral faculty, yet is often neglected because of the demands inherent in the faculty role. METHODS: The purpose of this paper is to present a case study of a scholar mentor group composed of three graduates of a PhD nursing program and their shared dissertation chair, who acted as a senior scholar mentor to the group. FINDINGS: By working together, we have been able to enhance our scholarly productivity by disseminating our dissertations through presentations and publications. The paper will present the evolving process of this working group, summarize outcomes, analyze the challenges, and provide suggestions for future doctoral students and faculty who are working with them. CONCLUSIONS: Our experience and scholar mentor model captures the best of both worlds-the benefits of interaction with academic peers and the benefits of having a senior scholar mentor. This was accomplished while all members were at different schools in different cities and states. Although other literatures that document successful collaborations using a peer-mentorship model are available, we were unable to locate any that documents a post-doctoral group with a senior scholar mentor who continued working together after graduation.

Exploring the skin-to-skin contact experience during cesarean section.

PURPOSE: To explore and describe the mother's experience of holding her neonate in skin-to-skin contact (SSC) immediately after cesarean delivery during surgical closure and recovery. DATA SOURCES: Eleven women between the ages of 23 and 38 years, who had achieved 39.1-40.2 weeks gestational age, participated in an ethnographic study using observations and interviews with the mothers conducted at 24-48 h postdelivery. Interviews were transcribed verbatim and content analysis of both observational notes and transcripts were used to analyze the data. CONCLUSIONS: Findings from this study describe the mother's experience of SSC during cesarean section. The primary theme that emerged was mutual caregiving: the mother-neonatal interaction and their shared and reciprocal relationship and benefits during SSC. Two contextual issues also were illuminated (a) the father's influence on the SSC experience and (b) the cesarean environment. IMPLICATIONS FOR PRACTICE: With cesarean section the most common surgical procedure among American women, advanced practice nurses are in a unique position to encourage and educate women on the use of SSC for their benefit and that of their newborn. Advanced practice nurses are also empowered to influence institutional policy on SSC during cesarean deliveries at the local and national level.

Exploring the Cancer Experiences of Young Adults in the Context of Stem Cell Transplantation.

BACKGROUND: Cancer is the leading cause of nonaccidental morbidity and mortality among young adults (YAs) in the United States. Stem cell transplantation (SCT), a treatment modality for a variety of YA malignancies, often requires prolonged hospitalization and immune-compromising treatment regimens. Stem cell transplantation may isolate YAs physically and emotionally, contributing to uncertainty about treatment processes, outcomes, and long-term sequelae. Studies in this population suggest that uncertainty can contribute to difficulty accomplishing basic developmental tasks. Few studies have examined the experiences of YAs in active cancer treatment, particularly those undergoing SCT. OBJECTIVES: This study explored the cancer experiences of YAs aged 18 to 25 years leading up to SCT and explored how YAs construct issues of uncertainty related to the transplantation experience. METHODS: Interviews with 14 YAs conducted within 24 hours of admission to undergo SCT were analyzed using thematic analysis from a medical ethnographic perspective. RESULTS: Themes emerged within 2 domains: relational and psychoemotional. The relational theme of "altered relationships" included the subthemes of "moving from" and "moving toward." The psychoemotional theme of the "power of perspective" included the subthemes of "optimism," "acknowledgment of death," "informational empowerment," and "developing a new outlook." CONCLUSIONS: Our findings offer new insights into the YA experience in the context of active cancer treatment, specifically how the cancer experience impacts relationships and how this experience is influenced by YAs' perspectives. IMPLICATIONS FOR PRACTICE: This study provides a foundation for addressing the psychosocial needs of YAs hospitalized for SCT, paying particular attention to the development of specific interventions.

Experiences of paradox: a qualitative analysis of living with cancer using a framework approach.

OBJECTIVES: Life-threatening diseases such as cancer represent unique traumas-compared with singular, time-limited traumatic events-given their multidimensional, uncertain, and continuing nature. However, few studies have examined the impact of cancer on patients as a persistent stressor. The aim of this qualitative study is to explore patients' ongoing experiences of living with cancer and the changes encountered in this experience over time. METHODS: Written reflections to three open-ended questions collected from 28 patients on their experience of cancer at two time points were analyzed to explore participants' experiences and perspectives over time. Content analysis using a framework approach was employed to code, categorize, and summarize data into a thematic framework. RESULTS: Data analysis yielded the thematic framework-living with paradox, consisting of four interrelated themes: sources, experiences, resolution of paradox, and challenges with medical culture/treatment. The primary theme concerned moving through a dualistic and complex cancer experience of concurrently negative and positive emotional states across the course of cancer. CONCLUSIONS: Respondents indicated that cycling through this contradictory trajectory was neither linear, nor singular, nor conclusive in nature, but reiterative across time. Recognition that patients' cancer experience may be paradoxical and tumultuous throughout the cancer trajectory can influence how practitioners provide patients with needed support during diagnosis, treatment, and recovery. This also has implications for interventions, treatment, and care plans, and adequately responding to the diversity of patient's psychosocial, physical, existential, and spiritual experience of illness.